The story of living in spite of melanoma, CLND (X 2!), metastasis, vaccines, anti-PD-1, lung removal, and stereotactic radiation. (With a little adenocarcinoma ex-goblet cell carcinoid thrown in!!!) The story of life with family and friends. {Posts under ~ Sew Chaotically, Travel Chaotically, and Chaotic Cookery also housed within! A girl's gotta have fun!}

About Me

Who am I? That is a question the rest of you could probably answer better than I. I am a wife, mother, daughter, sister, friend, pediatric nurse practitioner, cook, teacher, gardener, lover of words and music, occasional seamstress, and homemaker. I do have a couple of talents of questionable merit: I can create a decent meal in less than 30 minutes. I can feed and/or soothe almost any baby. And I can remember practically any song I've ever heard. For the rest, I'd rather those who know me decide.

Wednesday, January 30, 2019

If you have followed this blog for 10 minutes, you know that when faced with Stage 3b melanoma 16 years ago, my only options for treatment were interferon or watch and wait....'cherry picking' lesions as they developed, surgically! Since, even then, we KNEW that interferon did very little to treat melanoma generally and provided NO statistically significant impact on overall survival, but DID make you sick as a dog ~ I watched and waited. Here's how that decision went down when I met with my oncologist after learning I had a node positive for melanoma back in 2003:

"Next stop, oncologist.He was an incredibly sweet man who very sadly informed me that HE felt devastated whenever he had to take care of patients with renal cell carcinoma or melanoma.(Years later, Dr. Weber also said: “Melanoma is the kind of tumor that gives cancer a bad name!”)My local onc begged me to do a year of interferon.When I noted the sad facts related to interferon’s lack of tangible success in prolonging life or preventing further disease, he replied with tears in his eyes, “But you’re so young, I just can’t stand it for you to do nothing.” His dismay and horror at my condition were most disconcerting and uncomfortable, but in 2003, there really was nothing else to offer.I decided to “watch and wait” as the rest of my body including my brain was clear on scans."

Here are zillions of posts/reports/abstracts on interferon that I've written since then:

Interferon-α
favors a Th1 shift in immunity and combining with ipilimumab (ipi) at
3 or 10 mg/kg may down regulate CTLA4-mediated suppressive effects
leading to more durable antitumor immune responses. A study of
tremelimumab and high-dose interferon-α (HDI) showed promising
efficacy supporting this hypothesis.

For
eligible and treated patients (N=81) at a median follow-up time of
29.8 months, median PFS was 4.4 months when ipilimumab was used
alone and 7.5 months when HDI was added. Median PFS was 3.8 months
with 3mg/kg ipilimumab and 6.5 months with 10mg/kg. By study arm,
median PFS was 8.0 months in arm A, 6.2 months in B, 5.7 months in C
and 2.8 months in D. The differences in PFS and overall survival (OS)
did not reach statistical significance. Adverse events were
consistent with the known profiles of ipilimumab and HDI and
significantly higher with HDI and ipi10.

While
PFS was increased, the differences resulting from adding interferon-α
or higher dose of ipilimumab did not reach statistical significance
and do not outweigh the added toxicity risks.

I repeat THEIR words: "...the differences resulting from adding interferon-α or higher dose of ipilimumab did not reach statistical significance and do not outweigh the added toxicity risks." Not to mention, the ipi/interferon combo results did not begin to approximate the results that can be gained by either anti-PD-1 product (Opdivo or Keytruda) alone!!!! For the love of all that is holy and your Hippocratic oath - Kirkwood, I beg you! STOP with the interferon!!!
For what it's worth. Still yelling, for more than 16 years - with melanoma, but WITHOUT interferon. Would really like to stop having to climb back on this soap box! - c

Sunday, January 27, 2019

Inclusion. Exclusion. Where does fashion fall? Are designers, of ready to wear garments and patterns alike, obligated to provide fashion for ALL shapes and sizes? Must designers include all body types, members of all possible ethnic, racial, and gender groups in their advertising? Should all garments proffered be usable/wearable for every conceivable human condition? Including mom's who are breast feeding? Folks in wheelchairs? Those who require colostomy bags? Where do the responsibilities of the business owner/designer fall? Should expectations for the content included in a large multinational business be different from a small family run establishment?

I grew up admiring ads for the United Colors of Benetton like this one:

In researching Benetton for this post, I found this beautifully made video they created supporting equal rights for women, United by Half. The underlying audio follows:

"We're not better halves, or worseDefinitely not the weaker halvesWe won't settle for lessAll we want is our halfOur half of the spaceOur half of the takeOur half of the giveOur half of the strengthOur half of the opportunity for educationOur half of the shareOur have of the decisions, in the decision-making.Women have been denied their half for far too long.Let us unite for the equal half."

Currently, some fashion brands have chosen to embrace various social positions. TOMS campaign to end gun violence and Nike's embrace of Colin Kaepernick (the former 49ers quarterback who began taking a knee to highlight police brutality and social injustice in 2016) are two examples.

Multiple independent sources report Blake Mycoskie, TOMS founder, not only put his company on the line with this campaign, he donated $5 million of his own money to various gun violence prevention organizations. Using various media platforms to explain his desire to facilitate change after the shooting at the Borderline Grill in California in November, the campaign facilitated the sending of over 600,000 postcards from American citizens to their elected officials advocating for universal background checks within the first 10 days of its launch and garnered support from loads of celebrities from Snoop Dog and Tyler Hubbard to faith leaders and chefs.

Clearly, taking a stand can be fraught. Companies choosing to do so will certainly have patrons that support and back those efforts, while others, including political leaders, may vociferously object and even work to punish them for their stance. It is also possible that there are those in the industry who are adopting positions and diversifying their cat walks solely to favorably impact their bottom line irregardless of their true beliefs. After all, money talks. I know I am not alone in choosing to spend my dollars at companies who (at least appear to) support my values and avoid those who take stands against them. And while I'd like to think my money matters, there is tremendous value in the patronage of the powerful. Jason Wu was unheard of in many circles until Michelle Obama started wearing his designs. No matter the reasons behind it, or what we think of it, you need look no further than September's New York Fashion week to see that inclusion was embraced in more than a few shows: Designers of Color Show Out With These Inspired Fashion Week Looks, Sameer Rao, COLORLINES

And while all the topics I've covered here over the past few days percolated in my brain this month, I discovered Niki Groom of MISS MAGPIE Fashion Spy, an incredible artist who, when unable to find the diversity she seeks in the fashion world, creates it herself!

Thinking boy friend jeans? She's got you covered with that and more!! Her art and attitude are amazing. This illustration is but one of many diverse presentations up on her IG feed and blog.

I do not have all the answers to the questions I pose. But, I am confident they will be found. Wiser, more talented heads and fingers than mine are working on it! But, once again, I am certain the sewing/making community will be together leading the way and....

...sharing their many united colors. After all, Benetton ain't got nothing on us. ~ les

Saturday, January 26, 2019

I will never know what it is like to be a person of color. I will never know how the mother of a black son feels inside as she watches him walk out her door. But, through emotional talks I have had with my friends in that position, I have some appreciation of what they go through when they think about Trayvon Martin. When their heart aches for their own sons and daughters. I will never know what it feels like to wear a hijab, especially in an environment in which you are the ONLY one doing so. I will never know what it is like to be brown in a country with an orange president who maligns the character of those who look something like you; demanding a wall to keep others with brown skin out. Still, stories graciously shared by my Hispanic sisters describing their lives today as well as when they arrived in this country as school aged kids, speaking no English, being placed in classrooms where no students or teachers spoke Spanish, are seared in my soul, giving me some modicum of insight into their lives. Insight I can utilize in order to broach some understanding of the lives of others.

Similarly, if you have never experienced a life threatening illness, despite all the compassion you can summon, you will never know how that REALLY feels. Without being given the diagnosis you will not know what it is like to face each day with a chronic illness. Cancer. Mental health issues. And those of us who ARE dealing with such things, still cannot KNOW what it is like to deal with a disease process different from our own. Further, as we are all unique, even if you are dealing with melanoma right this minute, you will not necessarily know what I have felt on my journey; just as I cannot fully comprehend what you have felt as you endure yours.

I think I understand much of what folks who have been marginalized due to race, creed, or sexual orientation have to say when they speak passionately about the fact that they are not obligated to educate those around them to their experience. Amid such discussions, they often implore folks who are not part of their particular group to educate themselves. Do not call upon them, the marginalized, to do the emotional work and research that those who do not understand where they are coming from need to do for themselves! I get that. I do. No one is obligated to teach me what I do not know. I should not place my ignorance on the shoulders of those who are already carrying more than their fair share of the load. As thinking, empathetic adults, we can and should be able to learn what we need to regarding the plight of others.

Still, we are not born 'knowing'. As a nurse and medical provider, I have spent my life teaching. Teaching parents how to feed and keep their babies safe. How to give medicines I prescribe. How to carry out needed procedures, from basic nasal suctioning to urinary catheterization. Teaching teens how to navigate puberty, bullying, you name it! Similarly, as a person living with melanoma, scars and treatments over the past 16 years, I work to educate and help others by sharing my experiences and research here and on melanoma forums. Knowledge fosters access to needed treatment and health. Knowledge combats fear and prejudice. Knowledge paves the way for compassion. Knowledge is power.

Shared experiences, whether as tangible facts and data or emotional human responses driven by circumstance, bridge the gap between ignorance and understanding, diminish stigma, build connections that allow for empathy and camaraderie rather than hate, fear and anxiety. It is far easier to recoil from that which is unfamiliar than that which has been made known. It is much easier to seek help from the medical community if you see others who have benefited in that way. Knowing what another has encountered while on this therapy or that medication allows the individual to have better conversations with their medical provider and allows their family and friends to support their dear ones in a more explicit way. Real life stories open doors, facilitate access - strengthening those who tell and those who listen.

So while these lovely humans and fellow makers were under no obligation to expand my comprehension of their plight, I am ever so glad they have given of their time, energy and psyche to share a bit of their world with me ~ and you....

Rochelle, of Home Row Fiber Company and her blog, Lucky Lucille, has taught me a great deal about living with ichthyosis and the strength of the human spirit. Check out her post, My Most Favorite WIP and click on the link to her IG story within.

And finally, I recently happened upon "Conversations From Our Days", a podcast hosted by Kate O'Sullivan. Her skill in interviewing without leading, assuming or speaking for her subject is impressive. The story that she facilitated Susan Crawford to tell as a breast cancer survivor here touched chords of my own experience that brought some tears, but simultaneously made me feel less alone.

Stained glass window by Chagall at the Art Institute of Chicago.

When you are willing to share your truth, more people are listening, learning and benefiting than you will ever know. Thanks to all of you mentioned here today, along with all the other dear ones who have expanded my life through the willingness to share yours.

Friday, January 25, 2019

As a young girl, one of the many backward blessings of my life was that one of my sisters and I spent long hours each week in the public library. Thank goodness we liked to read!!! And read we did! Books from that small local library saved me. They introduced me to people and places I had never seen, taking me far from the chaos of my home in the swamps and piney woods of that small Alabama town. I read Pearl Buck's "Pavilion of Women" looooong before I had any idea what a concubine was! Still, the bowls of rice, chop sticks, dark blue tunics of workers in the rice paddies, and beautiful silks of kimonos were brilliantly etched in my mind, despite not having an opportunity to experience Chinese food until I left that town at the age of 19! The vivid characters from Aldrich's "A Lantern in her Hand", Cleaver's "Where the Lilies Bloom" Ellison's "Invisible Man", Giles' "Johnny Osage", Hemingway's "For Whom the Bell Tolls", Jackson's "Ramona", Llewellyn's, "How Green was my Valley", all of Steinbeck, Stowe's "Uncle Tom's Cabin", down to Whitman's "Leaves of Grass" colored my world. Yes, in the end I read through the stacks in alphabetical order, cause that's how I roll. Initially, the librarian looked at me and my sister quizzically, but soon abandoned attempts to curate or limit our selections. Those early introductions to people and places so different from the world around me allowed me to see beauty in the "other", in those "different" from me and mine. We all need that.

And so it is in the world of makers. We like to be seen for what we do and who we are. But... We need to SEE others!!! Luckily, technology provides access to the beautiful lives and creations of makers across the globe with the touch of a button. All the colors of the rainbow, are right there, if I but look. And by working together to build one another up, to highlight those who, as I noted yesterday ~ "bring greater equality and diversity into our lives and our shared making with kindness and light" we can experience all the shades of beauty from red to violet!

Thursday, January 24, 2019

For the past few weeks, since this post (My Year of Color, by Karen Templer, of Fringe Association), things have been rather "chaotic" in the sewing community!! You can check out her post, her response, as well as all the reactions to both as you like. I've decided against reliving them here. However, those posts and responses sparked intense debate, soul searching, heart felt stories, and countless conversations about inclusivity, people of color, white privilege, acceptance, understanding, and lack thereof in the sewing/making community. I admit that I have been distressed and saddened by all the conflict. Since discovering this incredible family of makers, I have been nothing but impressed with its generosity of spirit. I have bragged to all who would listen about the consistent solidarity its members express on the side of HUMANITY across the globe - whether in reference to the horror of terrorist bombings and other evil, families separated at the U.S. border, too many shootings and lives lost in my country to list, women's rights, environmental protection issues, commercialism, ethical fabric sourcing, minimizing waste, LGBTQ rights, recycling, voting rights, the benefits of art and music for our children, health care for all, or the rights of indigenous people. The recent conflict has been a bit like witnessing your parents fight. (Or maybe that's just me ~ projecting...) Still, I have thought about what has been said in all quarters and have come to some conclusions of my own.

I hate the ugliness with which a handful have chosen to make their points. Thankfully, that tone has been a smaller part of the overall conversation, but if one is not careful, it can be the only part that is remembered. Still, the bullying and harshness of the few have made me want to celebrate those who have consistently made desperately needed points about improvements the sewing community can make, as well as actions we can all take, to bring greater equality and diversity into our lives and our shared making with kindness and light.

Who am I to butt in like this? Well, nobody really. Like most, I have experienced incredibly shitty things and extraordinarily wonderful blessings. I was raised in a tiny lumber town in south Alabama. I have worked hard all my life. As a teen I worked summers and holidays as a maid and assistant to the local dentist. Handing over instruments and making appointments 4 days a week. Cleaning toilets, slimy shower curtains, stripping wax from hard wood floors, and cooking dinner for the lady of the house on Wednesday, often with old, shriveled, limp vegetables. A circumstance I found very strange for those who had wealth I could hardly fathom. To this day, if an errant carrot or stray potato gets left in the bin too long it is referred to as a "Dr. Parker vegetable" by me and mine! And I was lucky! That job allowed me to save money to move out on my own. I have been fortunate to attain three college degrees, all paid for by my own dime or academic scholarships I attained. Oh, yes. I'm white! And I mean very white! As a melanoma survivor for the past 16 years (Stage IV for the past 9) the sun is not something I expose myself to directly! In my first nursing job at the age of 19, via a move to Chattanooga, bank rolled by money saved through my work, I was acutely aware that while all the aids were black, save one, there was only one black nurse on my floor. I knew that was NOT a coincidence. I am forever blessed and grateful that Ms. Leslie, the ward clerk, happily became my mother hen, and Sandra, Connie and Angela were willing to become not just part of my team, but friends. I have spent my adult life providing the best care I can to my little charges and their families, no matter race or creed - preventing, ameliorating and abolishing health disparities based on skin color and socioeconomic status whenever possible.

I was blessed to have two amazing healthy children, now lovely adults, for whom I never had to fear I would not have food to put on their plates or a warm, safe place for them to sleep. I worked to teach them about every race, religion and culture across the globe. I wanted the lives they chose to be their own. I made sure my son had access to dolls and my daughter to trucks. Once, when working as a community organizer before that was a thing, I called and/or visited every resident in the area in which I lived to let them know about a zoning change the city was about to institute that would have made repairs and basic housing beyond the financial reach of many - dragging a toddler and preschooler door to door. As I was buckling my son in the car to leave one such visit, he asked, "Mommy, what was wrong with that man?" I drew a blank. "What do you mean, sweetie?" I replied. With his little brow furrowed, he continued, "What were those things all over his face? Was he sick?" With horror, I realized my children were completely without exposure to the elderly!!! They knew folks from Iran, Hong Kong, and India. They were familiar with people who were white and brown and black. Their friends were brown children at the local park and my daughter passionately desired "hair dudes" that consisted of lots of braids and beads. They could talk a bit about Christianity, Judaism, Buddhism, and American Indian religions, but wrinkles and 'liver spots' of the old were foreign. I worked to remedy that and we were successful in preventing the rezoning the city wished to foist upon us!

I am lucky to have dear ones of every color who love me; standing by me and mine through ever so many messes. My Hispanic friends have not labeled my interest in their lunches and recipes as "appropriation" but consider it a sign of true interest and embrace the sharing of our lives. I have black friends who are willing to talk hair and ashy skin with me. My white friends find me real and "down to earth" even though "I married a doctor."

In my recent 4 month incarceration, imposed by 2 abdominal surgeries and chemotherapy for Stage 2 adenocarcinoma of the appendix, I swear I have perused and studied every sewing blog and IG feed of makers across the globe!! As pain and drugs made reading books and making impossible, blog posts were sufficiently challenging to interest me without requiring extreme mental acuity while simultaneously allowing me to participate in my craft vicariously. It was a healing diversion for which I am indebted to many. Perhaps I am overreaching, but I feel as though I have friends across the United States, Australia, Spain, Italy, France, the UK, and the Caribbean!

Sew......in light of the recent discussions, I wanted to spend the next few days highlighting what others have generously and kindly offered to all of us:

To start, I wanted to begin with something that had been rattling around in my head and though I cannot (despite several hours of effort) locate the post or story it was in, but, I think was (???) noted in a story by Atia, from an interview Jasika did with a sewing magazine. My sincere apologies if I have that all balled up!!!! At any rate, the writer acknowledged that all of us with hobbies we love are incredibly lucky. Lucky because we reap the benefits our creating bring us - physically and emotionally. We are clearly affluent enough to participate. Meaning - fabric, yarn, machines, needles, etc, are not cheap! It would be much more feasible to purchase a cami for $1.69 from Wally World!! Further, though many of us are working moms we do, though there are plenty of days it doesn't seem so, possess the ultimate luxury - TIME - to spend on our making. Not to mention if we are blogging and posting on IG, we have computers and phones at our disposal. As such, we are lucky and more blessed than many. For my part, I am incredibly grateful for the time and monetary ability to participate in my craft as well as the mental and physical strength to do the things I love as a maker.

With that, I would like to start by highlighting Atia, of The Bright Blooms and her post ~ About Being Inclusive

In her honor, and to share some lovely color on a cold winter day, there's this...

Farmers Market in San Francisco, thanks B!!!

So.....YES!!! Despite the angst, the difficulty of facing a need for change, the work required to make change a reality - getting cray, cray in the sewing community can be a good thing. Who better to make it so, than ~ makers?????

Wednesday, January 23, 2019

Grainline Studio has been a consistent go-to pattern company for me. Their Alder Shirt Dress, Morris Blazer, Linden Sweatshirt, and Archer Button Up have become tried and true patterns!!! They go together perfectly. A straight 8, with no alterations can be counted on to fit my shape. So when B was talking me into purchasing this thick cotton woven flannel-ish herringbone, I knew just what to do with it!

An Archer as Shirt Jac!!!

The bum ruffle adds extra interest and fun! I was a little worried if it would be manageable given the thickness of this fabric, but it worked out just fine!!

And since winter has decided to make a return in these parts, the timing of completion is perfect!

Still, the warm snap we experienced has already inspired my NEXT Archer!!! It is cut and ready to go in a very light weight cotton voile acquired in Paris at Frou Frou!! I've cut the 8 and may curve it in at the side seams just a bit! But, it will have to wait a minute! After all these button ups, I'm taking an easy knit break!

Cold rainy winter days are perfect for a cutting palooza!!! Sew excited!

Isolated
limb infusion (ILI) and intralesional PV-10 are well described
locoregional therapies for in-transit melanoma. The objective of this
study was to assess the effect of these treatments on survival
outcomes within a cohort matched for key characteristics. Patients
were treated using ILI or intralesional PV-10 at a single institution
and the data prospectively recorded. Propensity score matching was
performed using key covariates within a logistic regression model.
The primary outcome was the melanoma-specific survival.

Seventy-two
patients nonrandomized were successfully matched. Both treatments
produced similar best overall responses. The median melanoma-specific
survival (MSS) was 74.4 months from ILI and 36.4 months from PV-10
treatments. Within the ILI subgroup, the 12-, 24-, 36- and 60-month
MSS rates were 85.3%, 75.3%, 60.1%, and 60.1%, respectively. From the
time of PV-10 the corresponding 12-, 24-, 36-, and 60-month MSS rates
were 82.6%, 70.0%, 53.9%, and 35.9%. On multivariate analysis, there
was a significant difference in survival comparing completely with
noncomplete responders. These
findings demonstrate that ILI and PV-10 treatments for in-transit
disease produce comparable long-term survival. Both therapies have
reproducible response rates and predominantly localized and tolerable
side-effects.

While ain't nuthin a done deal in melanoma land, I am glad that intralesionals are proving helpful to more melanoma patients and melanoma researchers are working toward finding the best ways to utilize it on its own and in combination with systemic therapies for the greatest benefit. I hope that more intralsional options, in addition to TVEC, will be FDA approved soon. I long for head to head comparisons. Still - it is progress and that is good. Thanks, ratties. - c

Friday, January 18, 2019

Lot's of sewists are wisely and ethically talking about and acting on "Stash Busting" ~ the process of using their current "stash" to make beautiful things rather than purchase more and more. For the uninitiated, a "stash" may refer to fabric purchased and stashed for future use, but can also include patterns, ribbons, buttons, and other bits and bobs. I used buttons I already had in MY stash (recycled from shirts that had gone the way of the dodo) in my recent makes for my boys. I applaud those goals and work to keep my stash small and used as well.

But, this post is about what to do with the little scraps leftover from your making! If you sew often, the quantity of these bits can really add up. Sadly, I would end up throwing lots of these remnants away! Or box them in a closet never to be seen or heard from again! As one who recycles and composts, this was not okay!!! Obviously, I use pieces that are sufficiently large to make facings, line pockets, and even piece together garments. Some patterns really lend themselves to that! Here are a few I've used:

The Linden Sweatshirt by Grainline Studio is a great way to use remnants! You can make it long or short and even piece the front and back as needed, based on the size of your scraps!

The Polly Top (a FREE download from By Hand London) is another great scrap buster. This one was made using a gingham remnant and fabric from a knit top that was never worn! The one below was created from a scarf Roo didn't use and a bit of left over yellow cotton gauze!

I've lost count of the Sorbetto Tops (a FREE pattern from Colette!!) I've made! The back can be cut on the fold (or not) and the length and utilization of the front pleat is up to you.

This little top (M7093) is also useful for scrap busting and lends itself to lots of different looks!

V1440 creates a pretty top, which allows you to use bits of your stash in the contrast pieces.

I've made several workout tops using M7610! A fun make and another great way to use up those random bits leftover from knit projects!!!

Another way I use my larger scraps is in making bias binding:

It's actually fun to make!

When you use it, the results are so cute and profesh!!!

But what about those smaller bits...that really can't be used for pattern pieces or binding???? SADLY, I was tossing those!! No more! I have embarked on two new projects that will let me find a useful, pretty outcome for them as well!!!

Now, before completing a project, I am cutting scraps into 2 inch wide strips. Once I have enough in color groups I like, I will start piecing them!!!

For the bits that are too small for even that???? Got plans for those, too!!! As filler for a POUF for B to rest his leggies on!!! (There are lots of options out there, but Closet Case Patterns has a free pattern available.)

I've put together an AMAZING system for collecting these scraps!

A shopping bag hanging near my sewing area makes gathering them easy!!!

Time will tell how these last two projects turn out. So far, I think I'm set to collect the building blocks for both of them!!! Here's to "stash" and "scrap" busting!!! Sew Chaotically!!! - les

Thursday, January 17, 2019

I learned today that you are gone. I believe you always knew how much you meant to me. I certainly knew how much your lovely S and those kiddos meant to you!!! You were such a trooper. A loyal man, dedicated to your family. You were so glad to be able to spend more time with them, often mentioning your walks and meals with S in particular, in these recent years. I am glad you had that. You were patient and brave. Willing to play my silly musical games. Willing to 'call BS' on my shenanigans as needed. Ready to offer help to others when you could. Thanks for putting up with my silliness and bossiness. I am so glad I got to meet you and S in person. I loved your smile. I will miss you, my friend. But, I will hold you and yours in my heart forever. Rest in deserved peace. May precious memories soon bring more smiles than pain to dear S and your children.

Wednesday, January 16, 2019

Unfortunately, joint pain while on immunotherapy is fairly common. The degree to which the patient suffers is almost the only variable. Some of us are managed fairly well with things like ibuprofen and stubbornness. Others are debilitated to the point that treatments must be delayed and other medications like steroids and immune modulators like Remicaid are required. If you search this blog under 'immunotherapy side effects', you will find zillions of articles on joint pain and immunotherapy.

Rheumatic immune-related
adverse events (irAEs) occur in approximately 10-20% of
anti-programmed death 1 (anti-PD1)-treated cancer patients. There are
limited data on the natural history, optimal treatment and long-term
oncological outcomes of patients with rheumatic irAEs.

The objective of the study was
to describe the spectrum and natural history of rheumatic irAEs and
the potential impact of rheumatic irAEs and immunomodulators on
anti-PD1 tumour efficacy.

Cancer patients with
pre-existing rheumatic disease before anti-PD1 therapy or de novo
rheumatic irAEs on anti-PD1 therapy were retrospectively reviewed
across three sites. Patient demographics, treatment history, anti-PD1
irAEs, and anti-PD1 responses were evaluated. Relationships between
the development or pre-existence of rheumatic irAE, use of
immunomodulatory agents and outcomes were evaluated.

This multicenter case series
describes 36 cancer patients who had rheumatic disease before
anti-PD1 therapy (n = 12) or developed de novo rheumatic
irAEs (n = 24). Thirty-four of the 36 patients sustained
rheumatic irAEs (median time to rheumatic irAE: 14.5 weeks),
including 24 de novo (18 inflammatory arthritis, three myositis, two
polymyalgia rheumatica, one fasciitis) and 10 flares in 12
patients with pre-existing rheumatic disease. Corticosteroids were
used in 30 of 36 patients (median duration: 10 months), and
disease-modifying antirheumatic drugs were used in 14 of 36
patients (median duration: 5.5 months). The objective response rate
to anti-PD1 therapy was 69% (n = 25/36) overall and 81%
(n = 21/26) in the melanoma subgroup.

So yes, there may be the need to continue treatment for joint pain and arthralgias after completing immunotherapy. However, these response rates look pretty good!!! Pros and cons - the life of a melanoma rattie. Hang tough out there! - c

Tuesday, January 15, 2019

Yep! That's me at the age of 3, rolling out pie dough!! I still love cooking. I once wrote: It is an artistic outlet with love and utilitarianism combined. For me, cooking is fun, relaxing, and provides a delicious result!! But, better than all those things, it allows me to share time and love with dear ones. Brent and I worked hard to make sure that we sat down to dinner with the kids EVERY DAY! It was a precious opportunity to share our day, laugh, and EAT!!! We are all hardy and adventurous eaters which added to our cooking fun. For us, our travels often began in the kitchen with a cookbook and culminated in bringing the tastes and smells discovered on our adventures back home, as we worked to recreate dishes we had enjoyed. Which brings me to this....

As I clipped recipes and documented my own, I kept them in this black spiral notebook. Eventually, the kids dubbed it the "Black Magic Cookbook" and made this cover!

If you want the best "Beef Stew" in the world, there's just no competition. Simply turn to Julia Child's Boeuf Bourguignon! You can't beat it. For an easier, cheaper, yet still really delicious version there are lots of French Daubs. Here's mine...

Do NOT get hung up on specific quantities or ingredients! It's stew after all! Add what you like. Don't want to use wine, use extra broth or water. Don't like carrots? Leave them out. Got some mushrooms wasting away in your fridge? Toss them in!!!

Stew is not the most photogenic dish!

But on a cold day in January, it is a beautiful the thing. And if you aren't careful, your bowl will empty before you remember to take a pic!Now, if only some birds would come to my feeder!!

Guess they heard me!! HA!

May you enjoy a lovely winter day!! And, if you're up to it - a little Chaotic Cookery!!! - love, les

Seventy-four metastatic melanoma
patients were treated with autologous TIL and evaluated for clinical
response according to irRC, overall survival and progression free
survival. Immunologic factors associated with response were also
evaluated.

Best overall response for the entire
cohort was 42%; 47% in 43 checkpoint naïve patients, 38% when
patients were exposed to anti-CTLA4 alone (21 patients) and 33% if
also exposed to anti-PD1 (9 patients) prior to TIL ACT. Median
overall survival was 17.3 months; 24.6 months in CTLA4 naïve
patients and 8.6 months in patients with prior CTLA4 blockade. The
latter patients were infused with fewer TIL and experienced a shorter
duration of response. Infusion of higher numbers of TIL with CD8
predominance and expression of BTLA correlated with improved response
in anti-CTLA-4 naive patients, but not in anti-CTLA-4 refractory
patients. Baseline serum levels of IL-9 predicted response to TIL
ACT, while TIL persistence, tumor recognition and mutation burden did
not correlate with outcome.

This study demonstrates the
deleterious effects of prior exposure to anti-CTLA-4 (though perhaps that result is only due to those patients being "infused with fewer TIL"??????!!!)on TIL ACT durability and perhaps more importantly shows that baseline IL-9 levels can potentially serve as
a predictive tool for response and help guide treatment sequence and selection.

On the other hand:

Rapid
complete remission of metastatic melanoma after first-line treatment
with nivolumab plus tumor-infiltrating lymphocytes. Zhao, Yang, Li,
et al. Immunotherapy.
2018 Sep 10.Melanoma
is the most common type of skin cancer in both men and women in the
USA. The standard treatment modality for advanced melanoma is
immunotherapy, either alone or in combination. As single-agent
immunotherapy is usually inadequate, combined immunotherapy might be
a good choice and combined treatment modalities appropriate for
melanoma need to be explored. Herein, we report a case of metastatic
melanoma successfully treated with combined therapy of
tumor-infiltrating lymphocytes and nivolumab. Complete remission was
achieved approximately 4 months after the initiation of treatment.
The treatment was well tolerated and only grade 1 fatigue occurred.
The patient was still on complete remission 1 year after stopping the
treatment. Our result showed that this treatment modality might be an
ideal option for patients with metastatic melanoma.

Wonder if that patient would have had that complete and durable response to nivo alone, as I know from personal experience (and that of others) that nivo alone CAN provide complete responses in contradiction to the statements made in this report. Additionally, how did this patient attain this therapy? Hmmm....
For what it's worth. - c

Friday, January 11, 2019

Since October I have had a blast sewing for others. This challenge was no exception. Three men's shirts for three of my fave boys! The challenge was that I had none of their actual measurements nor bods available for fittings. But, there was a lot of love and a resident "Mannie" (aka B!!!) to use as a block for adjusting the garment smaller or larger in areas I felt appropriate for each recipient. I chose this McCall's pattern as it had good reviews and the simple lines I wanted. Poor Jamester's shirt was the guinea pig, in that I made his first. For him, I made a straight medium with no adjustments. It went together very well! Fabric choice by his girl, Miss Roo!!!

Rather lame pic, as MY "mannie" is way too small for this shirt....but still!

Much cuter on the Jamester himself!!!

Now - nice flannel versions for my Dear Double D's. Pic from a celebration with Dan and Don a couple of years ago!

I had fun playing with the pockets!

The placket for the cuff was super easy because the sleeve was made in two pieces. Leaving a portion open and hemmed formed the placket. I flat felled the seams using one of my favorite tricks - sliding a plastic clip board underneath the fabric so pinning is easy while the piece remains on my ironing board.

Ta dah!!!!!

And they're done!

I think they liked them!! At any rate - I had fun! Sew chaotically!!! - les

Tuesday, January 8, 2019

Yesterday was my first follow-up appointment with my oncologist after completing (in my own special way, full deets in prior posts) the 4 rounds of oxaliplatin and capecitibine in the past 3 months prescribed as adjuvant for my Stage II GCC. Whew! In so many ways!

It was pretty non-eventful as expected. Here's my self report: My feet still burn quite a lot. Although I no longer feel like I am walking in over-sized clown shoes! My fingers are still pretty numb at the tips but I can type, pick up pins and deal with other fine motor skills much better than previously. The area of the IV infiltration to my right forearm is still red, weird and tender - but improving since B had the genius idea of putting a moderate strength steroid cream on it twice daily. It is no longer waking me with pain when I accidentally smush it in my sleep! I have been dealing with pretty significant joint pain, particularly to ankles, knees and hips since the very start of treatment and they are still hanging around with a vengeance! The brown splotchy lesions I developed are gradually resolving. Oddly, patches of vitiligo that I began to develop in my Opdivo trial are increasing. So, weird. BUT! My abdominal pain is gone!! I can eat pretty much what I want though I am taking that adventure slowly and still taking my pepcid. Currently, salads, citrus fruit, and apples with peels are back on the menu! FYI (with a TMI warning!!) ~ After surviving 2 months of liquid poopage every 2 hours round the clock following surgery to remove my appendix and right 1/3 of my colon, succeeded by obstruction and a second surgery, and all sorts of crazy poopage problems while on CAPOX with at least 4-6 loose stools on the good days, things are much better! Stooling is not "normal" with 2-3 loose stools per day combined with some urgency ~ when you gotta go - you gotta go!!! Still, if you are facing this sort of colon removal, it is a manageable process!

Anyhow, the main point of my recheck was to determine a plan for long term follow-up. B rechecked with the docs I consulted at Vanderbilt, not to mention all the papers and peeps knowledgeable about GCC. We went over their points and her own perspective with my local oncologist. In the end, we determined that I will have my first follow-up scan (a low dose CT without contrast of the chest and regular CT with and without contrast of the abdomen and pelvis) at the end of March. Future scans are planned to be a CT without contrast of the chest combined with a CT of abd/pelvis WITH contrast only, in order to keep continued radiation exposure to a minimum. The consensus is to have your first scans 6 months after diagnosis and then annually. Additionally, I will be seeing the oncologist and having lab work, to include a "CEA" level, every 3 months. What is "CEA"? Carcinoembryonic antigen is a protein in your blood that is normally very high in a fetus, but is usually low in healthy adults. It can be elevated in those adults should there be a growing thyroid, lung, breast, ovarian, pancreatic, stomach, bladder, colon, or rectal cancer. As you see from the list, GCC is NOT included. We are rolling with this test due to its usefulness in colon cancer which may, or may not, match up with my cancer. In fact, when it was drawn in the hospital just after having said cancer, my levels were normal. But, we'll try it. B is also researching other tests we may add to the mix. How long will this go on? The end point was not conclusively determined, but will likely be somewhere between 3-5 years. All peeps interviewed agreed that we are at the point in my melanoma ta-dah (16 years overall, 9 years Stage IV and over 8 NED) that I am no longer in need of scans in that department. Obviously, additional studies would be ordered should I develop untoward symptoms or demonstrate adverse numbers in my lab values.

In the spirit of upward and onward, combined with a break in the cold rainy weather that has been a bit perpetual lately, B and I have done some "structural" work on our garden (taking out some saplings and overhanging tree branches, pruning overgrown roses, crepe myrtles, fruit trees, and rhodies) as well as taking down some netting/fencing that prevented the intrusion of rabbits and deer not at all! I have continued to increase my indoor work-outs moving from 10 minutes to 15 on the elliptical as well as upping the 'level' from 3 to 4! I am doing more sit-ups, push-ups, planks and reps with my weights. But, the coup de grace to call an end to my incarceration is this: I completed my first run since August! It was more of a slog. Only a mile. But, I did it!!!